Our discovery with Juvenile Rheumatoid Arthritis

Archive for December, 2010

I was so prepared this morning, I had Cat put on tights so they could get to her ankle quicker then put a skort on over top, and then when I get there, they said SURPRISE, we going to do her knee too. So I was like crap, and before they sedated her I was able to taker her tights off. So this morning, we had to leave extra early because of the snow on the roads. It took us 2 hours to get there this morning. Catherine was really nervous, and while we were waiting I played tic tac toe with her. I was trying to keep her mind off the upcoming procedure. When the nurse called us back, it was different today than before. UNC Chapel Hill has a Pediatric Sedation Team that does these types of procedures. SO Jeff and Michelle were her nurses. They were the nicest set of people I ever met. Really tried to make Catherine feel comfortable, they put numbing cream on the spots where they were suppose to give her the IV. It took about 20 mins to work. Then they took her back into the radiology OR, and the nurse gave her some go to sleep medicine, and they put her oxygen to measure he CO2 output. The radiologist used fluoroscopy and xrays to guide the needle into the joint. It only took about 45 minutes for the entire procedure. Then after-wards the radiologist came to talk to me to tell me how she did and what to do if she experiences pain. So then about 10 minutes later the nurses came to get us and go with Catherine to recovery. So after she kept food down they discharged her..BUT IT WAS FREEZING outside and was a long walk to the car. So I PRAY that this works and the arthritis leaves her body. I will give her the methotrexate injection today, I didn’t give it to her yesterday because I was afraid she was going to be sick from it this morning..

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Well, yesterday in Chapel Hill was ok I suppose. We were at UNC Chapel Hill’s Dental School. I hear it is suppose to be the best in the nation, (could be a little onesided) however we met with the Oral/Facial TMJ Specialist. She looked at her MRI, and she said she would prefer looking at it in it’s true form (on the films) but would have to settle for now. SO she asked how did Catherine do with the joint injection in her knee, and I said ok. So she is going to do a joint injection in her jaw (ouch)! So instead of doing it in Chapel Hill because this falls under her mouth, the Dental and Medical Insurance don’t want to pay for it. SO I will have to have the procedure done at Womack. Which I am a little nervous. When I got sedation done at Womack I almost died! I am just a little uneasy, most of these doctors, change every 2 years. I don’t know I really hope they are the best. However the Dental TMJ Specialist said she will be there to do the procedure but it is almost like she is teaching the military doctors. She comes to Fort Bragg once a month to do oral/facial surgery…SO ehh I am just now so sure…Even though this doesn’t bother Catherine, you can she when she closes her jaw, it does a little popping before closing. Anyway Monday Dec 27, we are going to have her right ankle injected in Chapel Hill.

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So today we talked to the nurse and she has Cat’s sterile injection procedure scheduled in a couple of weeks, we couldn’t start the Enbrel just yet because of the insurance hasn’t approved it yet…WOW, I hope they will approve it.

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Well Catherine took her first dose of the new Myobic medicine, it stayed down and she didn’t complain about her stomach hurting! I am happy…she missed her injection this week, so I am going to give it to her tomorrow, it will be three weeks I wanted to make sure she was free of infection before I started back on her methotrexate regiment…

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So yesterday I was taking Cat to the pediatrician to follow up with her infections, and so far they are looking ok. However when I updated the file she told me that Catherine would be her only patient that has ever been on Enbrel, and she has only seen 1 other JRA case in her 20 years of being a pediatrician. I know Wednesday when I went to Walmart because the base didn’t carry the meds, she needed. We went to Walmart and they were trying to order this medicine in which Walmart can’t order because they just don’t make it, so I had to find a pharmacy that could compound it. So I am still on the quest to find it Walmart faxed it somewhere but now I don’t know where. It is amazing to me that this is such a rare disease for kids, and not alot of doctors know about it. I mean I sit here and ask why me, why my kid, why now? What is GOD trying to teach me? I think did I wrong someone in the past and it is coming back on my kids? I usually try to live by the good book, and I haven’t committed any ethical wrong doings. I just pray that it goes away.